In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

It is refreshing to read the various TM experiences as it makes living with its effects a less lonely experience. Here is my story, different in some ways, but, oh, so common in many other ways.

I awoke on the morning of August 2, 1997, my husband's birthday, and went down to the kitchen to prepare a special breakfast for him. While filling the coffee carafe with water, I experienced an excruciating pain between my shoulder blades (T3). Trying to continue with breakfast proved impossible so I went back upstairs to bed until the pain subsided. Well, the pain did not subside, it intensified and I began experiencing muscle spasms in the same T3 area. I could not stand the pain and asked my husband to take me to the hospital. The ER doctor prescribed Tylenol with Codeine for the pain, and muscle relaxants to be taken once every 6 hours. He also instructed me to lie flat on a hard surface for a day or two until my back felt better. I followed his instructions to the letter, and stayed in bed the entire day. Missing my family, I tried to join them downstairs in the evening, but that didn't work at all due to discomfort, so I went back upstairs.

It was about 11:00 PM when I got up to go to the bathroom and my legs felt rather numb and didn't work very well, but I was no longer in severe pain. I was due to take another muscle relaxant and skipped it thinking that they were working too well. About 5:00 AM I again got up to go to the bathroom and I fell by the side of the bed. I thought to myself how strange that the muscle relaxants were still too effective even after having skipped the last dose. I decided to go back to bed and see how I felt in a couple of hours. When I awoke at 7:30 AM, I really had to go to the bathroom but discovered that I couldn't move. I even had trouble doing much more than lifting my arms. Being more concerned with relieving my bladder than lack of movement, I asked my husband to drag me into the bathroom. I had no results and decided it was time to go back to the hospital.

Arriving at the hospital unable to move, I saw the same ER doctor from the previous day and he was obviously puzzled. My husband and I joked about the situation, as it was too absurd to comprehend. No one wakes up paralyzed! While a nurse was tending to me, she overheard me joking to my husband, "I know that my work is stressful, maybe this just proves Freud's theory." I later learned from the floor nurses that the ER nurse reported this to the doctor and they took it quite seriously; they included a rectal exam to rule out psychosomatic illness.

My family practice doctor arrived at the hospital and took over my care. We are a military family and were stationed in Fairbanks, Alaska at the time. Medical care works very differently in the military and in Alaska. I received a low dose of steroids intravenously and the doctor conferred with the civilian neurologist; the military neurologists were all stationed in Anchorage, which is six hours away. They transported me, along with my doctor, by ambulance to the local civilian hospital for a MRI and to see the neurologist. They determined that it was not a tumor, which never entered my mind as a possibility. I assumed it was Multiple Sclerosis, but had no previous experiences to establish that diagnosis.

For several days I was a puzzle to the doctors. The nurses made an ink mark on my chest to make sure that the paralysis did not move upward and interfere with my breathing. They also made frequent checks. As there was a low census on the floor, and my case was intriguing, I received excellent care and a lot of attention. They were surprised at how well adjusted I was emotionally. I can only attribute my positive outlook to my deep faith in God, and the wonderful support, love, and care that I received from family, friends, and everyone at the hospital. At no time did I ever feel as though my life lacked meaning or luster. Quite the opposite; I learned that my life was deeper and richer. Walking is an accessory. Not being able to do it doesn't devalue your life, it makes it different and that is all. My one concern was that of not being able to run after my then 10-month-old baby. In fact, she learned to walk before Mom did!

It was several days before the neurologists in Anchorage made the diagnosis of acute TM and they did this over the phone. No one in my little hospital had heard of this. The nurses immediately got information from the Internet and forwarded it to me. I had begun physical therapy and had regained more use of my arms. I still could not sit up on my own or remain upright. They began a daily regimen of 500 mg intravenous steroids over a five day course. This apparently helped, as within a week I was able to sit up, with difficulty. My mode of transportation became the wheelchair, although I didn't have the strength to maneuver it myself and relied on others. Another week and I could wheel myself around. A week later and I was using a walker for very short distances. My progress was fast in some respects, yet slow when I look back and compare it with my present abilities.

After spending a month in the hospital, the last two weeks were spent waiting to move into handicap accessible quarters. I left the hospital using a cane for short distances. I returned to work two weeks later working part-time for four months then returning full-time. I had absolutely no business at all working during those months. Feeling exhausted, I took naps in my office. Unable to lift much, co-workers carried my files to meetings for me. However, my biggest concern was memory deficit. Once priding myself on excellent memory and reasoning abilities, I found myself unable to remember current conversation let alone anything else. I adjusted by carrying a notebook and post-it notes. Although my short-term memory currently remains impaired, it is not as debilitating as it was two years ago.

Since moving to Oklahoma, I have chosen not to work. I nap almost daily and move about much more easily; the last year has proven to be one of tremendous healing. I currently walk without a cane most of the time, although I do have the infamous left leg limp. I was diagnosed with MS a little over a year ago, but I mystify my new neurologists as lab results and MRIs still do not support the MS diagnosis. When I do have an exacerbation, I am given 1gram of Solu-Medrol daily for 5 days. I have seen tremendous improvements following each exacerbation. I have even water-skied this summer, it's not frequent, fancy, or for long, but I'm up there! However, these neural improvements may just be the result of time.

I continue to have a positive outlook and realize that I may not be among the walking for much longer. But my faith and family is stronger than ever and I have much for which to be thankful.

Glenn & Beth Gambrell
gambrell[AT SIGN]lawtonnet.net

Hello, folks. Transverse Myelitis - I had never heard of it; at my age, 69, I was well aware of all the bad things that can take you out. I had the check up every year, had kept the weight where it belonged and generally was in good shape.

In the summer of 1993 everything was fine. We were planning a trip to the West Coast to see family members and gather for a birthday party. Mine was July 11, my sister on July 25. Everything went fine. I felt fine. No symptoms or discomfort. Came back home about August 1. Went back to our regular work, and was sailing right along.

On the night of approximately August 30, I was preparing for bed, and went upstairs and noticed a slight weakness in the legs. I didn't think much of it. It had been a hot day, and I had done some heavy lifting, but noticed nothing at the time. In the morning it was still there. No symptoms other than the weakness.

In the following weeks, I went on about my work, but being plagued by back weakness. I went to my GP about November 1. He took some x-rays and examined them. He remarked that one disc looked slightly compressed, but didn't think that would cause my problem.

Well, we rocked along working and the other things people do. The weakness not getting much worse. But after the first of the year, 1994, I decided to see a back specialist. He offered nothing. Saw him again in a few weeks, still zero. Well, I thought, maybe I can wear this thing out, and surprisingly nearly did.

I think in February, a cold winter day, the legs felt 90 or 95 percent. But it was short lived. In a few days, I was going downhill again. Went back to the back-man a third time. Finally, he said, go on home, you'll be okay. This was on April 4, 1994.

By the end of April, I was barely able to walk and sought out a third back-man. He asked me a few questions, and looked at my walking, and said, "you don't need me, you need a neurologist." I told him, name me a good one. He did and we saw him on May 5th. A MRI the next day, another two days later. When we looked at the film a day or two later, the trouble was right there at T6 on down. The doctor commented to my son, "we have to do something for your Dad or he will lose the use of his legs."

Well, we saw him several times in the next few months. Took some steroids, but no benefit. Finally, I told him, where could I go to get some help? He replied, Baylor Medical Center in Houston. Got here about August 1, 1994. Saw the head neuro, took another MRI. During consultation his statement was, "you got something going on in there, but we don't know what it is." I replied, "well, let's find out, and do something."

The sad truth is there is nothing you can do, in my case anyhow. I stayed there five more days, took a lot of steroids, no help. In fact, after two days, I had to use a walker. After I got home, the latter part of August, my walking improved and quit those steroids thereafter.

From then to the end of 1994, it was a steady decline until by Christmas it was nearly wheelchair time. We sought help a couple of other places, but nothing good came of it so it is not worth going into details.

Now, as to everyday life, it isn't too bad. I use a Foley catheter and have had good luck with it, no complication. As to the bowel actions, I have made it predictable by careful eating and use of senna tablets taken at the right time learned by trial and error.

Most of the time, I feel good; do a little real estate work from my home mostly by phone. TM is a mysterious disease. Thank goodness we don't have much of it. Treatment of nerve disorders is very difficult, nearly impossible, simply by the way we are made.
To other TM victims, make life the best you can. Help your caregiver. Very important, think positive, keep busy, do something productive and do something for those who help you. If I can help anyone with anything, talk, encouragement, please call me any time.

It's a beautiful day in Texas!

Best regards,
Ed Eaton
PO Box 93
Lometa TX 76853
(512) 752-3626

My name is Doreen Bronstein. I live at Morwell, which is in the Gippsland area of Victoria, Australia. This is my story.

It was the 22nd of September 1994, my Birthday, and I was turning 57 years young. I awoke at the usual time and followed my normal morning rituals, toilet, wash, etc. I then made myself cuppa and returned to my bed as it was too early to get up. When getting back into bed, I got this itch in my left leg and then in my right leg also. So, I got out of bed and went and sat in the lounge room on one of the chairs. Within 10 minutes I was paralyzed.

I sang out to my husband, Harry, and told him that I had lost the power in both of my legs. By this time panic really had set in as I didn't know what was wrong. Harry rang the ambulance and they then took me to our local hospital. By this time I was paralyzed and I was scared stiff.

I was in sheer agony all that day and they did all the relevant tests and discovered that I had TM. I was affected from T12 waist down, losing the control of my bowel and bladder. I spent 12 days in the hospital in Melbourne and until the 16th of December in Rehabilitation.

I had very mixed emotions about going home. It was up to me to pick up my life and to not wallow in self-pity. The re-adjustment was very hard on both my family and me. Over time, things are getting much easier for every one, and things have returned back to some semblance of normality for all. I was a very independent person before this happened. This was my hardest lesson to learn, how to rely on other people for help and to be tolerant and to be patient.

The best thing that has come out of this is my enjoyment of simple things and my realization that I have to live life to the fullest. One of my greatest joys is my little Chihuahua puppy, "Freckles". She came into my life two years ago when I probably was at my lowest ebb. She was only 3 months old when I got her, and she has enriched my days and is my greatest comfort. I love her to pieces.

My TM has been improving through time. Every little step forward is a miracle. In five years I have gone from a wheel car to a walking frame, to crutches and now I only use a cane. They told me I would never walk again and I am living proof that with perseverance and courage, anything is possible. To the other people out there that may think TM is the end of their world, take heart and never ever give up.

Regards,
Doreen Bronstein and "Freckles"
jaycol[AT SIGN]vic.australis.com.au

My name is Rob Hudson. I am 35 years old. I've been in great physical shape my whole life. I've been in the fitness business for 15 years and have operated my own fitness center for 10 years. I was diagnosed with Transverse Myelitis June 27, 1997 by a neurologist. My worst symptoms were intense bladder pain and strain to urinate, severe right hip and leg weakness and numbness and quivering in my lower extremities. I was in the hospital for three days while they performed numerous tests. Intravenous steroids were administered immediately and continued orally for two months. It's been three months since my diagnosis and my bladder and bowel function is fine. I still have low back and leg weakness and shakiness and some foot numbness. Coping with Transverse Myelitis has been extremely challenging emotionally. I have always taken great pride in my body and my strength.

I would like to talk to anyone who has had a case that is similar to mine.

Sincerely,
Bob Hudson
3733 Zuker Court
Carmel, Indiana 46032
(317)876-1050